Focusing on health outcomes: the patient perspective

During the
recent FHIR DevDays in Redmond WA (US), there were a couple of speakers
representing the patient perspective. We recorded some video interviews in
Redmond to discuss the increasing role of patients within the FHIR community
and at FHIR DevDays.

“When we’re doing FHIR, we’re interested in
health outcomes”, according to Grahame Grieve, FHIR product owner. The patients
and their family members that take care of them are one of the key stakeholders
in this process.

“Patients have to be at the table so that their perspective is heard. Bringing clinical and patient advocates to DevDays inspires the developers to see the bigger picture, to see this not just as an IT problem but as a health problem. Digital health is only a means to an end, so I’d like us to build in that direction.”

Grahame Grieve, “FHIR is about health outcomes”

“Patients learn along the way what’s important to them. Let patients help, and they can’t help if they don’t have access to the data. Don’t prevent the patient from trying to help. Enable people with new knowledge and their health data”, according to Dave DeBronkart, also known as e-Patient Dave.

Dave: “I learned that nobody can perform to the top of their potential if the right information is not there at the time of need. Health IT has improved over the years, getting potentially lifesaving information and making sure that it is available wherever that patient ends up. We’ll need transparency, full visibility of the data. This will not cause miracle cures, but it will help for healthcare to achieve its potential. As a patient I want to create my own mashups of any kind of data, in order to do that we have to liberate the data. I’m thrilled that FHIR is making this a reality.”

e-Patient Dave, “we need to liberate the data”

Grahame: “We’re
making progress, we’re seeing transitions, clinical providers are starting to
look at what we’re doing and saying ‘we can imagine a different world’ – right
now all we can do is imagine a different world, and I want to turn that from
imagination to reality.”

DevDays

DevDays meetings
are not just about IT, but about things like process change and patient
empowerment.

Grahame,
when asked about the impact of his long term vision on DevDays: “If digital
health is going to mean what everybody needs it to mean, then we need to have a
much wider engagement. With DevDays you see a conference series much more
focused on downstream application [of standards] rather than standards
development. The next step after that is further into the clinical/ patient
community. These are not sudden transitions, you plant the seeds of a community
and watch it grow.”

At Firely we’re discussing hosting a ‘Patient Track’ for the DevDays meeting in Amsterdam, and we’re going to continue to invite prominent speakers to address the patient perspective. The aim being to help with the process of growing that seed.